Use of landscape analysis survey to determine available resources for patients with epilepsy within transition to adult care network
Abstract number :
2.069
Submission category :
13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year :
2025
Submission ID :
292
Source :
www.aesnet.org
Presentation date :
12/7/2025 12:00:00 AM
Published date :
Authors :
Presenting Author: Chyanne Reyes, MPH – Children's Hospital of Philadelphia
Kelly Duffy, MPH – Children's Hospital of Philadelphia
Sarah Stoney, MSW – Children's Hospital of Philadelphia
Benjamin Yerys, PhD – Children's Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania
Adam Greenberg, MSN – Children's Hospital of Philadelphia
Marissa DiGiovine, MD – Children's Hospital of Philadelphia, Perelman School of Medicine, University of Pennsylvania
Rationale: The transition from pediatric to adult care for youth with autism and/or epilepsy (YAES) can be difficult. The objective of this project is to establish a network of medical and community partners that offers consistent and accessible resources across the region for YAES that are transitioning to adult medical care in the Philadelphia Metro Area.
Methods: To determine existing resources within the domains that influence the transition to adult care (Figure 1) in our regional and national network, we distributed a landscape analysis survey to 13 network members from medical and community systems that serve YAES and adults (Figure 2). The digital survey was sent via email. The network additionally held virtual meetings monthly to further discuss strengths and barriers of the existing capacity to transition YAES from youth to adult providers.
Results: The survey response rate was 92% (n=12). 100% of respondents reported that they offer services in at least 1 of the domains that influence transition for YAES. The 2 domains that were most represented by the network were Healthcare and Education (both n=9). The 2 domains that were least represented by the network were Independent & Community Living and Employment (both n=3). Some community partners (n=2) and a regional medical partner (n=1) offered services in all domains (Figure 1). National medical partners were unaware of community resources within their states that mirrored the types of services that are available within the Philadelphia Metro Area. We identified discrepancies between available services for pediatric versus adult patients; this discrepancy was reinforced during discussions at the network meetings.
Conclusions: There are different levels of support available for YAES in child-serving and adult-serving medical systems. Likewise, medical and community systems differ in their levels of support for YAES. Given their broader support services, community resources may offer opportunities to bridge the gaps found in medical systems and support any YAE that is moving into the adult medical system (Figure 2). Since many local network members remain unaware of available resources, we must raise awareness of the strengths and weaknesses across the region to foster continued collaboration between partners to better support YAES. Other regions can also use the landscape survey method to identify gaps and strengths in their own local networks.
Funding: This work was supported by HRSA-24-042 (“Transition for Youth with Autism and/or Epilepsy Demonstration Projects”).
Health Services (Delivery of Care, Access to Care, Health Care Models)